CAC2 Childhood Cancer Community News Digest (February 6-12)

Assorted News from the Last Week:

Microchip disruption due to the pandemic is trickling down to impact access to hearing aids.

Pediatric cancer survivors appeared at increased risk for late mortality associated with modifiable chronic health conditions, according to study results published in JAMA Network Open.

Pediatric rhabdomyosarcoma protocols should include more detailed imaging guidelines.

Access matters: lack of resources is associated with increased mortality in childhood cancer survivors.

Upcoming Webinars, Online Opportunities, and Meetings:

We are pleased to invite CAC2 members, associate members, student members, and supporting organizations to our February CAC2 All-Member webinar:  Pediatric Cancer Advocacy In Your Own Backyard  on Wednesday, February 15 at noon ET.  Register Here

The International Replication Repair Deficiency Consortium (IRRDC) is hosting its 3rd educational webinar on Constitutional Mismatch Repair Deficiency (CMMRD) syndrome on February 15, 2023 from 1:30 -3:00pm ET. Click here for more information.

On February 15th 6:00pm – 7:00pm ET there will be Q&A Zoom event to hear from Mariella G. Filbin, MD, PhD; Co-Director, Brain Tumor Center of Excellence; Director for Research, Pediatric Neurooncology Program Dana-Farber/Boston Children’s Cancer and Blood Disorder Center; Assistant Professor of Pediatrics, Harvard Medical School. She will discuss her research with pediatric brain tumors including DIPG and how The Sajni Chakrabarti Fund for Pediatric Brain Cancer Research has been supporting her work.  Click here for more information.

On February 19-22, 2023, the San Antonio Pediatric Cancer Symposium (SAPCS), hosted by the Greehey Children’s Cancer Research Institute – UT Health San Antonio, in conjunction with the Mays Cancer Center, will bring together some of the most respected childhood cancer researchers from academia and industry to the Marriott Riverwalk; to discuss how today’s advances in basic and translational sciences are impacting tomorrow’s therapies and diagnoses.  Click here for more information.

Buddy’s Place offers an 8-week support group each spring and fall. While children and teens engage in goal-oriented activities that are age-appropriate, parents and caregivers participate in a group focused on understanding children’s grief and how to better help the children work through it. The Spring 2023 Session will begin on March 21, 2023 and the Fall 2023 Session will begin on September 11, 2023.  Click here for more information.

On Friday, March 24, 2023 from  9:00 a.m. – 5:00 p.m. ET NCI is gathering experts from around the country virtually and at the National Institutes of Health campus for the 2023 Childhood Cancer Data Initiative (CCDI) Annual Symposium. The hybrid event will bring together presenters and panelists to discuss CCDI’s progress and opportunities for the future.  Click here for more information and to register.

SAVE THE DATE!  The Alliance for Childhood Cancer is excited to announce that Action Days 2023 will return back to Washington, D.C. from April 24-25, 2023. Registration will open in early 2023.

Recordings of Recent Past Events:

Dr. Kimberly Stegmaier of Dana-Farber Cancer Institute describes the progress her research team has made in Ewing sarcoma. Her team’s work targeting the EWS-FLI fusion, one of the fusion oncoproteins that drives childhood cancers, addresses one of the Cancer Moonshot recommendations set forth by the Blue Ribbon Panel.

January’s CAC2 All-Member webinar provided an opportunity to clear up some of the confusion the IRS Form 990 can cause for many non-profit organizations. In the first half of this webinar, participants learned key information to complete the 990. The second half of the webinar answered questions from participants.

Take Action:

International Childhood Cancer Day (ICCD) is on February 15th.  It is time to spotlight the essential role of families, caregivers, and broader communities in positively impacting the lives of children and adolescents with cancer. We hope you will join in this global effort.  The ICCD Advocacy Toolkit is available to inspire and guide participation in the campaign by families, caregivers, patients, survivors, healthcare professionals, and advocates at all levels, with emphasis on regional activities in local languages.

The Conquer Cancer Patient Advocate Scholarship Program provides an opportunity for patient advocates to attend the ASCO Annual Meeting in person and then return to their organizations and communities to share what they have learned.  Applications will be accepted online only, from Wednesday, March 8 at 12:00 PM Eastern Time until 12:00 PM Eastern Time on Friday, March 17. Once the application period opens, a link to the fillable online application will be posted on the Patient Advocate Programs at the ASCO Annual Meeting and Conquer Cancer Patient Advocate Scholarship Program pages of Cancer.Net, ASCO’s patient information website.

The ASCO-Sponsored Patient Advocacy Booth at the 2023 ASCO Annual Meeting will provide 40 complimentary exhibits to patient advocacy organizations.  The 2023 ASCO Annual Meeting will be held at McCormick Place in Chicago, from June 2 –6. Applications for FREE booth space will be accepted between Wednesday, February 1 at 10:00 AM (ET) and Friday, February 10 at 5:00 PM (ET).  Click for more information.

Survey Respondents Needed (click): Understanding emotional distress in childhood survivors of cancer – posted by an NHS psychologist conducting this research with the University of Liverpool and Alder Hey Children’s Hospital. Participants: 12 – 18 yrs & parents

Caretaker Study Participants Needed (click): Michigan State University researchers need your help to understand how to improve food safety recommendations for cancer patients! We are recruiting caretakers of cancer patients ages 18 and younger who are currently in treatment or have been in the past two years. We are looking for participants to complete a 10-minute online survey and optional 30-minute online interview. Participants will be compensated $10 for completing the survey and $25 for completing the interview, in gift cards of their choice. You may contact Carly Gomez () with any study questions.

The CAC2 Survivorship Team is building a comprehensive six category Childhood Cancer Survivorship Toolkit to provide info & resources to help survivors/families.  If you have explored resources for your family, or to assist others, THEY NEED YOUR HELP!  Please add your resources using the appropriate form below:

●      Educational Guidance and Planning
●      Insurance and Financial Health
●      Managing Physical Health and Late Effects
●      Psychosocial/Emotional Health/Wellbeing
●      Transitioning to Adulthood
●      Wellness/Healthy Behaviors


The Communication Team at the Childhood Cancer Data Initiative is hoping to identify personal stories from the patient/caregiver/survivor perspective to feature in their monthly newsletter debuting next month.  Each month the CCDI progress update will include three stories of people in the childhood cancer community that either relate directly to childhood cancer data sharing or allow them to highlight a need that CCDI would help meet.  Please email Vickie at of you have a story or would like more information.


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